Potions, Pills and Community Care for People with Learning Difficulties: Hidden Costs

Dinah Murray BA MA PhD

From archive at

1999 “Potions Pills and Human Rights” in Good Autism Practice April

See also: Discontinuation of thioridazine in patients with learning disabilities: balancing cardiovascular toxicity with adverse consequences of changing drugs (BMJ 2002;324:1519) and Autistic People Against Neuroleptic Abuse

Potions, Pills, and Community Care for People with Learning Difficulties: Hidden Costs[1]

1. Tens of thousands of people diagnosed with learning disabilities are prescribed antipsychotic (neuroleptic) medications, often in higher doses since moving into “community care” from longstay hospital [i] or family home. Their communicative frustrations often lead to behaviours which challenge carers’ capacity to cope [ii]. In most health authorities, the specialists who are most reliably on hand to deal with these difficulties are members of a psychiatric team specialising in learning disabilities, or sometimes members of a more broadly based team also dominated by the medical view.

2. Adults on the autistic spectrum are among the people most likely to be given neuroleptic drugs [iii]. As well as their communicative frustrations, there is a further reason for this. Autism is under-recognised, and symptoms like talking to oneself or “emotional flatness” may be misinterpreted as evidence of psychosis [iv].

3. The three individuals on the autistic spectrum whose cases I sketch in detail were all moved from longstay hospital to “community care” in 1990. After knowing them for about a year, I was asked by the care management concerned in late 1997 to do a risk-benefit assessment of their medication regimes. That involved investigating seven years of records. During the course of that assessment, Doreen ( a non-autistic service user in another project) came to our attention because of the parallels between her withdrawal symptoms and Bea’s. Alan, Bea, Chloe and Doreen were all being given antipsychotic drugs, which have a great variety of side-effects (see Table 1).

4. “For years we [British psychiatrists] have been prescribing drugs to our patients that we wouldn’t dream of taking ourselves or giving to our families” Professor Robin Murray (Royal College of Psychiatrists): 1997: Insights into Schizophrenia: Solian (amisuplride) symposium: 1

Table 1

Side effects of neuroleptic medications (compiled from manufacturers’ datasheets and elsewhere) [v]
¥ signifies an effect which may be easily missed in those who do not self-report
Frequent onset effects, sometimes fade with time.
Blurred vision ¥
Breast enlargement, milk flow
Constipation ¥
Decreased sweating ¥
Dizziness, low blood pressure ¥, falls
Drowsiness ¥
Dry mouth ¥
Headache ¥
Increased skin-sensitivity to sunlight ¥
Lightheadedness ¥
Menstrual irregularity or absence
Sexual difficulty ¥, decline in libido ¥, genital pain ¥
Stuffy noseEffects which typically remain, worsen or appear with prolonged useCataracts ¥
Difficulty urinating ¥
Difficulty talking ¥
Difficulty swallowing ¥
Eyes turning upwards
Fatigue ¥
Tongue edge “snaking” ¥(early sign of movement disorder)
Jerky movements of head, face, mouth or neck
Muscle spasms of face, neck or back, twisting the neck muscles
Restlessness, physical and mental¥ resulting in sleep difficulty
Restless legs resulting in inability to sit down
Saliva drooling
Seizure threshold lowered
Skin rashes, itches, discolouration
Sore throat ¥
Staring looks
Stiffness of arms or legs ¥
Swelling of feet
Trembling of hands
Uncontrollable chewing movements
Uncontollable lip movements, puckering of the mouth
Uncontrollable movements of arms and legs
Unusual twisting movements of body
Weight gain
Yellow eyes, skin (indicate liver problem)OtherCatatonic declineNMS neuroleptic malignant syndrome: a condition marked by muscle stiffness or rigidity, dark urine, fast heartbeat or irregular pulse, increased sweating, high fever, and high or low blood pressure. Unchecked this condition can prove fatal. Call the doctor immediately if you notice any of these symptoms.NB newer neuroleptics appear just as likely to provoke this syndrome. Toursades de Pointes: a condition which affects the heart rhythm and can lead to sudden cardiac arrest, when it is usually fatal.
Table 1

 Generic name UK brand name
Flupenthixol Depixol, Fluanxol
Flupenthixol decanoateDepixol
*fluspirilineRedemptin depot
Haloperidol Serenace, Haldol, Dozic
Haloperidol decanoate Haldol decanoate
Methotrimeprazine=levomepromazine Nozinan
Pipothiazine decanoatePiportil depot
SulpirideDolmatil, Sulparex, Sulpitil
Zuclopenthixol decanoateClopixol depot
Table 2

5. In every case their total dosage of drugs which directly affect the brain and thus thought and feeling – psychotropic drugs – had increased since leaving hospital.

6. Alan was placed in longstay hospital at the age of eight when his large family split up. In hospital in 1986 at the age of 30, Alan was described as “docile” on 75mg of chlorpromazine daily. Alan’s frequent mentions of someone called “William” were recorded as references to an imaginary friend. Those and the fact that he laughs and talks to himself seem to be the basis of his diagnosis as psychotic with autistic tendencies/ autistic with schizophrenic features. Alan’s intense interest in arches, spinning discs, rainbows, trains, planes and the Flintstones suggest that he is quite classically autistic. William is in fact the name of his older brother, then not seen for 22 years.

6.1. In 1990 Alan was discharged into community care on a daily dose of trifluoperazine equivalent to 500mg of chlorpromazine. By the end of 1997 he was having weekly injections of flupenthixol, a “depot” (slow-release) neuroleptic, equivalent to 750mg of chlorpromazine. As there is no hint that Alan has ever refused medication, it is unclear why he has been subject to the repeated, painful and humiliating experience of the CPN’s needle since 1991.

7. Bea was one of three children, two with learning disabilities; she went into the hospital full time at twelve years old, and left it at thirty-three. Although Bea rarely says anything beyond Yes No and Hurry! she is generally agreed to have excellent verbal understanding.

7.1. Bea’s move into the community was on 100mg thioridazine daily. By 1997 she was also on a tricyclic antidepressant, dothiepin hydrochloride, at 100mg daily.

8. In her early youth Chloe had frequent seizures, probably causing longterm brain damage. She was hospitalised as a result at the age of 9, when she lost touch with her family, and released into community care aged 26. Chloe does not speak at all. In 1986 Chloe was reported as being “quiet on 50mg Largactil” (chlorpromazine).

8.1. In 1990 she was discharged on zero medication. At the end of 1997 she was on the equivalent of 100mg of chlorpromazine daily in risperidone, a “new generation” antipsychotic.

9. Doreen is not autistic. Her development, in a large family, had been fine until she caught meningitis at the age of 9, in 1955. The brain damage this caused made Doreen very difficult to handle, and expert advice was that she should be hospitalised. Doreen sometimes calls out one of two or three intelligible phrases.

9.1. On discharge from hospital, in 1995, Doreen was on 150mg thioridazine, (50mg three times a day), 15mg procyclidine, and fybogel twice daily. By late 1997 carbamazepine at 400mg daily was added, for seizure control

10. Issues raised. Why is each individual on antipsychotic medication and is it effective?

11. Only Alan is judged to have a psychosis, and his levels of antipsychotic medication are accordingly much higher throughout than those of the others. But Alan’s autistic features are both prominent and unimproved by even the highest levels of antipsychotic use.

11.1. Alan had his dose of injected, slow-release, neuroleptic medication increased at intervals throughout the period of study. Two sorts of reasons for these increases are given. One is when the consultant feels “psychotic/schizophrenic symptoms are not being controlled”. Quantities administered per jab are raised. The other is when staff have commented that Alan’s alertness seems cyclical in relation to the jabs. The response has been to increase the frequency of injections. At one point, when care staff question the value of raising Alan’s dose, the consultant writes angry letters and increases his injection level not by the 30% originally proposed, but by 50%.

11.2. Alan continues talking and laughing to himself throughout the period of this study, though like all his behaviours those declined in frequency during 1997.

12. The origins of Bea’s being prescribed thioridazine can only be inferred since she left hospital on the drug. During Bea’s early years in the hospital, the early seventies, thioridazine’s sedative properties, (like chlorpromazine’s before it) were used widely to calm autistic individuals including children, in the hope that it would help them learn more easily and behave less disturbingly.

12.1. Bea is easily upset when people tell her what to do and will sometimes strike out and / or shriek loudly. It is plausible that those “challenging behaviours” were the reason for the initial prescription. Those also appear to have been the main reasons both for Bea being taken off thioridazine in 1994 (“perhaps she has become immune”) and for her being put back on it again a few months later. The idea that the drug would “control Bea’s mood swings” was also mooted (though it was noted as not doing so at the time of that comment).

12.2. In 1994, the year her father died, Bea’s dose of thioridazine was abruptly removed and replaced with temazepam. Her withdrawal effects included disturbed sleep patterns, restlessness and rapid weight-loss (typical withdrawal symptoms) . She was also weeping a lot. The nett effect was a new diagnosis: depression, and Bea was accordingly prescribed antidepressants. At the same time she was returned to thioridazine at the former level. The temazepam continued for some months.

12.3. Bea has continued to strike out sometimes, to shriek loudly sometimes, and to have sudden extreme mood swings throughout the period of study and up until the present.

13. Chloe is known to have been on chlorpromazine in hospital. It is not clear from the accessible records why she was returned to the drug a year after discharge. But it is known that Chloe had moved into a house with an aggressive fellow resident and that she was reported to be anxious and making frequent whooping sounds. It is also known that a doctor with whom care staff shared their concerns offered to “put Chloe on thioridazine if staff can’t cope”. Within months of that Chloe was prescribed 150mg of chlorpromazine daily. She gained weight rapidly and was reported to be quite sedated. After about a year Chloe’s chlorpromazine was phased out again.

13.1. Staff continued to express concern about fairly frequent anxiety and whooping, which they took to the community learning disabilities psychiatric team. Risperidone was prescribed to Chloe in response to those concerns.

13.2. Chloe has continued to experience apparent anxiety from time to time, expressed in whooping and hand-wringing, throughout the various changes in her medication. The frequency of these outbursts appears to have declined with the rehousing of her problematic fellow resident. It is not viewed as having increased since Chloe came off the medication in mid-1998.

14. Doreen is a very restless and often very angry, though sometimes very humorous, person. She is described as having “challenging behaviour”. Doreen often stays up all night, sometimes grabs whatever she can and throws it, sometimes shouts loudly for hours on end, sometimes pulls off her incontinence pads repeatedly. For a couple of years the only change in Doreen’s drug regime was an attempt to make her sleepy by giving her all the thioridazine at night. She is about 4’10” tall, and weighed under eight stone even at her heaviest.

14.1. In late 1996 a senior registrar who attended a drug monitoring meeting responded to staff concerns about the value of the medication by initiating its withdrawal. He proposed it should be stopped in steps, going from 150 to 100 to 50 to 0 over two weeks (inappropriately fast [vi]). According to staff report, the consultant intervened to accelerate this, skipping step 2 so that Doreen’s dose went from 100 to 0 overnight. No reason was given.

14.2. Doreen became extremely noisy, restless, and subject to tremor; she lost weight very rapidly and slept less than ever. Her disturbed vocalisations, diarrhoea and weight loss meant Doreen got taken to the GP. Only her tremor got attributed to the drug withdrawal. The other “symptoms” were treated as indicating a physical problem of some kind. Doreen had endoscopies and colonoscopies and at least one overnight stay in hospital for various further tests to be done. Early in 1997 Doreen was prescribed 8 paracetamol daily for presumed pain. She was still taking 8 a day a year later, even after she had been returned to the thioridazine.

14.3. Doreen’s family, who had been told that her tremor had got much worse because she had come off the drug, begged the GP to restore it, which he eventually did. When Doreen was rechallenged with thioridazine the dose was raised from 50 to 150mg overnight and Doreen had a seizure and was hospitalized for several days. When she left hospital she was still on that dose of thioridazine (and procyclidine, and isphagula husk and paracetamol) with carbamazepine at 400mg daily added for seizure control. Doreen was soon back in hospital again after a series of falls.

14.4. Doreen’s worsening tremor and restlessness during the withdrawal period are typical of symptoms both caused and masked by neuroleptics. The effect of Doreen’s botched withdrawal was a cascade of medical interventions, culminating in greatly raised levels of psychotropic medication.

14.5. Doreen continued sometimes to have prolonged bouts of destructive inarticulate rage, shrieked for hours on end, was intermittently defiantly uncooperative, and often stayed up all night, throughout the various changes of medication.

15. Need for drugs

16. A fundamental principle of clinical practice is the avoidance of harm unless a clearly greater good outweighs it. A fundamental presumption of doctor-patient relationships is that all treatment will be – to the best of the doctor’s belief – in the best interest of the patient. We have seen above that there have been no discernible benefits for the individuals taking the drugs. This is not to say that some drug regimes don’t help some people with learning disabilities.

17. If their lives are too unpredictable, too distressing, or too boring, then the anxiety or depression of individuals with autism and other learning difficulties may be disabling without chemical help. Temple Grandin reports a variety of helpful remedies, but excludes old-style neuroleptics [vii] [see Table 1]. Frequent cups of tea may go a long way, so may very low levels of antidepressants, of anxiolitics, or even of atypical antipsychotic agents like risperidone. But all effects of medication should be especially scrupulously monitored among people who are not going to speak up for themselves. Carers’ views should be respected [viii].

18. Chloe Bea Doreen and Alan were not apparently having any beneficial effects from their medication regimes. The utterance length and relevance of Alan’s communications have improved greatly since he has had his dose reduced. Chloe has lost weight, and become more assertive and continent since coming off risperidone. Bea appears unaffected by the gentle reduction of her antidepressant which has occurred. Below I outline some of the physical, quality of life and financial costs of their drugs.

19. Physical costs

20. Chloe Bea Doreen and Alan all experienced weight-gain and -loss in relation to increases or decreases of their medication. In all three it became a focus of concern. For Bea and Doreen their weight-loss was the worry, and was part of the picture which got Bea diagnosed as depressed and made Doreen the focus of medical inquiry. For the other two, weight-gain was usually the problem, though Chloe’s weight-loss was a theme of her medication-free first year after discharge. After chlorpromazine or risperidone treatment began Chloe’s weight rose rapidly. Alan’s total neuroleptic dose went up more or less steadily, and his weight was a nagging concern. After he finally came off the oral trifluoperazine Alan was noted to have lost some weight. When Chloe had her risperidone prescription reduced and withdrawn in 1998, her weight rapidly declined.

21. These issues occupied a great deal of care staff time. They were discussed frequently at staff meetings over a period of years. Care staff accompanied people on trips to dietitians, doctors, and hospitals. Taxis were hired, phone calls were made. Care staff went to the shops with more or less willing shoppers, to get larger and larger clothes, especially for Chloe. Special diets were undertaken, biscuit cupboards locked, exercise schedules devised and even put in place for a while. A packed lunch was prepared full of “lo-cal” preparations for Chloe to take to her day centre – where she used to join others in a hot meal. Meanwhile Doreen was extensively and expensively probed in the attempt to understand her weight-loss.

22. From time to time, usually in discussions with members of the specialist team responsible for psychiatric medication, care staff raised the possibility that weight-gain was associated with the drugs. The response was always to underplay its seriousness, and often to recommend that if care staff are worried they should exert more stringent dietary control.

23. In reporting side-effect profiles of psychotropic drugs, researchers customarily treat weight-gain as trivial. But obesity is deeply damaging to self-esteem, and associated with many physically harmful and even life-threatening conditions [ix].

24. It is often assumed that weight-gain is wholly due to increased appetite and should therefore be easily avoidable. Although neuroleptics are indeed appetite stimulants, there seem to be other factors in play Certainly staff believed that they were doing their job well and scrupulously making sure Chloe’s diet was low in calories but nutritious throughout the time of study. Yet while she was taking risperidone her weight was consistently within the obesity range, and her weight fell abruptly when she stopped.

25. Stanton in her 1995 review of the relation between neuroleptics and weight-gain suggests that “serotonergic transmission and serotonergic blockade may play an important role in mediating weight gain by increasing the oxidation of carbohydrate rather than fat.” Baptista and colleagues propose the alternative explanation that “Neuroleptic-induced obesity … might be related to an alteration in gonadal steroid balance secondary to hyperprolactinemia”. [x]

26. Risperidone both strongly affects the serotonin cycle and raises levels of the hormone prolactin to much higher than the norm (hyperprolactinemia) – almost all neuroleptics have this effect to some extent, risperidone has this effect very markedly [xi]. Hyperprolactinemia is probably responsible for Chloe’s other main side-effect, her periods stopped. When staff took Chloe to the GP to ask about this they were told not to worry, it was an early menopause – it happens. Nobody suggested it was drug-related, yet within a month of stopping the risperidone, Chloe menstruated again.

27. Raised prolactin may also be responsible for the depressed sexual function which often accompanies neuroleptic use. Since dose reductions both Alan and Chloe have shown signs, not previously noted, of sexual activity. Chloe’s urinary tract also seems to have been affected, since she has had fluctuating continence problems which appear to correlate with her medication changes.

28. Alan on six to seven times Chloe’s quantity of neuroleptic had a number of other serious side-effects, including muscle spasms, pseudoparkinsonism, and encroaching catatonia. Neuroleptic malignant syndrome – which involves temperature dysregulation, rigidity, kidney dysfunction and often rapid death – was a particularly dangerous risk for him because he was taking the medication in slow-release form. Emergency treatment includes immediate removal of the toxic element, ie the neuroleptic: the depot method makes this impossible. Catatonic withdrawal, rigidity and progressive decline in action of all sorts typified Alan’s life in 1997.

Table 3
Possibly interacting medications [xii]
Cough medicines
Preparations forblood pressure
nausea and vomiting
stomach cramps
thyroid problems
Sleeping pills
Table 3

29. Alan’s pseudoparkinsonism symptoms were addressed with procyclidine, raised from 5mg daily in 1991 to 20mg daily in 1997 with an extra 5mg prn (as required) . Longterm copharmacy with these drugs is commonplace but not advised: constipation, dry mouth, and liver damage are all promoted by this combination, specially at levels as high as these (as they are by either drug alone) [see Table 3 above]. Procyclidine also has a mood-elevating effect which means that it counts as a psychotropic drug, why ever it is prescribed. Alan is typically highly cheerful on 20mg a day. His tremor is quite marked at all times despite the procyclidin.

30. But the side-effect which provoked the most concern and caused the most extensive interventions in Alan’s life was the relatively insignificant problem of a congested nose. In 1993 somebody noticed the congestion and, moved by duty of care, took him to the GP. He was prescribed first one antibiotic, and then another, to no avail. Next he was referred to an ear nose and throat consultant, who tried another ineffective round of antibiotic before booking Alan for a sinus washout. That involved an overnight stay in hospital and a general anaesthetic. After it Alan was given yet more antibiotics. He still had a congested nose.

31. The consultant next prescribed a nasal douche: three quarters of a pint of warm alkaline solution to be pumped through Alan’s nasal passages daily by care staff. After ten months carers pointed out to the consultant that these douches appeared to be completely ineffective. They raised the possibility that the problem might be the result of an allergy. The consultant scorned this idea, and Alan continued to have nasal douches for another twelve months. He also had another sinus washout in hospital during that time. After the douches were finally stopped Alan went to a homeopath, who suggested his nasal congestion was caused by medication.

32. Financial costs [2] 

Figure 1.33. A month by month breakdown of Alan’s drug-related costs is presented in Figure 1. Comparative yearly totals for all our cases are in Figure 2. Overall, although the medications are “free” (everyone is on income support) they are not quite the bargain they may appear to be to care management. Carer time accounts for well over a third of the total drug-related costs in the cases studied here. That is an underestimate since only recorded instances have been quantified, and no phone-calls are included. Almost all the remaining monetary costs are borne by the NHS, funding both the drugs and their iatrogenic consequences. Chloe is the individual who is most out of pocket, because of her extremely oscillating weight and its pressures on her wardrobe.

34. Some user views from the autistic spectrum

35. “I was given thioridazine from ages 9-12. It worsened my pre-existing problems with communication shutdown and sensory confusion. Within a few months of discontinuing the thioridazine at age 12, I developed functional speech” (personal communication, anonymous)

36. “it was like living under water. My intellectual and aesthetic sensibilities were completely blunted and numbed, and I found it almost impossible to talk to anyone, even about the weather” [3] Edgar Schneider

37. “so began a time of ‘greyness’ as I took antipsychotic drugs” Wendy Lawson [4]

38. Dr Temple Grandin says, “Drugs such as haloperidol and thioridazine are sometimes used in institutions to turn autistic people into zombies. Neuroleptic drugs are very toxic to the nervous system…there are many safer medications which can be tried first” [5] *

39. The 1998 meeting of Autreat, (a gathering of individuals on the autistic spectrum, generally but not invariably at its more able, and vocal, end) had a session on medication, described here by Jared Blackburn [personal communication], who attended:

40. “It was mostly a session about what warning signs to look for in a medical professional who might be ‘bad.’ What was said on neuroleptics was generally to avoid them, some comments on parkinsonianism, tardive dyskinesia, neuroleptic malignant syndrome, etc. It was noted that neuroleptics lower the seizure threshold, and that (considering how many autistic people have epilepsy) it is unknown how many autistic people might have lower thresholds to begin with (even if not epileptic, yet) — thus, this was a potential added danger — seizures could be increased in a population that was already prone to epilepsy” (Cf Doreen, though she is not autistic).

41. Quality of life

42. Almost every effect of the drugs damages quality of life when assessed with the WHO’s scales, published in 1998 [xiii]. It appears that there is just one area in which quality of life may have improved. That is, it may be that the drugs have or are perceived as having a dampening effect on some behaviours which undermine “normalisation”. Staff may be more likely to venture into the community with someone who is less likely to emit loud cries.

43. Losing control over your limbs, your tongue and mouth, your bladder; getting fat, constipated and desexed; feeling like a “zombie” [xiv]: these may be prices worth paying if you are spared mental anguish thereby. But if your mental anguish is environmentally caused, or nonexistent, antipsychotics won’t help. Any “symptom relief” the drugs may offer is often to relieve not the patient but the rest of society.

44. For people cared for at home lack of emergency respite is a recurrent issue. Where there is no adequate respite provision, tranquilliser provision tends to be offered instead.

45. For people in care homes there is no continuity of care, and no paid carer can represent a learning-disabled person’s interests. The best such a person can hope for is that an active and committed advocate will volunteer for them, and that their service providers will encourage the advocate’s involvement. Few people are so lucky – for most their interests are represented solely by people with a stake in their docility.

46. Being persistently in the hands of doctors in itself can have negative effects on quality of life. In this study, there is only one doctor (of seven) who generated no medical interventions contrary to guidelines, all the others violated at least one guideline [6] for every meeting with one of our subjects.

47. Carer life quality suffers as well as patients’. Hours and hours of time which might otherwise be spent in positively worthwhile activities are lost. It’s no fun preventing people you care for from eating their favourite foods. It’s no fun administering medications, even when you’re convinced they work. It’s no fun seeing someone you care for turned into a zombie. It’s no fun being treated as someone whose well founded views are valueless. It’s absolutely no fun at all to pump three quarters of a pint of fluid through someone’s nasal passages day after day…

48. Discussion

49. Whatever its cause, every problem taken to a doctor tends to get treated as a symptom and have a medical treatment prescribed. Once a medical disorder has been identified, nobody but another doctor has the power to intervene. Preventing a patient from having a treatment a doctor has prescribed and the patient wants or making a patient accept an unwanted medical treatment would be unethical and in some contexts unlawful. When the patient is an adult diagnosed with a moderate to severe learning disability the situation is fraught.

50. Becoming an adult for most people means being recognised as capable of giving or withholding consent. If you have been diagnosed as severely learning disabled, however, you will not be seen as capable of that – at least in relation to medical treatment. That is in contrast with the choice and autonomy for people with learning disabilities emphasised in Community Care legislation and meant to govern the conduct of registered care homes for this population. However, that same legislation also lays down the obligation for registered care homes to follow all instructions from doctors. Overriding or failing to carry out medical advice could get a care home closed.

51. Ethical issues around consent are typically resolved in registered care homes by assuming all prescribing is in the patient’s interests. If you assume that without question, the idea that it would be contrary to the patient’s interests even to raise the issue may appear equally certain. But that is clearly not true.

52. Parents are less likely than professional carers to persist in assuming the benevolence of all medical practice. That is partly because they have experience over a long period, partly because they tend to have a profound commitment to their offspring’s wellbeing, and partly because they are unlikely to be “closed down” if they defy a doctor. But parents who try to argue with medical advice may find themselves as powerless as professional carers – they have no right to refuse treatment for their mature offspring.

53. Professional and non-professional carers alike are the people best placed to give clinical feedback to doctors prescribing for people who do not speak. The cases above testify that doctors do not always listen to professional carers’ views. Some individual histories which are in the public domain – such as the Bournewood case [xv] – show that doctors don’t always listen to non-professional carers’ views either.

54. Conclusions

55. These case studies illustrate widespread current prescribing practice. This practice can be costly in resources of many kinds, even when side-effects are relatively minor, as here. A very conservative extrapolation from these unremarkable cases puts the annual cost to the NHS at over £6,000,000 [7].

56. Not only is it costly, but it is flagrantly at odds with many of this government’s policies. For example, from the NHS publication Signposts for Success in Commissioning and Providing Health Services for People with Learning Disabilities: (1998, Dr Mary Lindsey)

56.1. “Shared values of person-centred services…Partnership and cooperation by all…working together effectively and with service users and carers… Shared responsibility to promote healthy lifestyles and to avoid adverse experiences… Service users’ wishes and needs should be at the centre of all services. People with learning disabilities must always be treated with respect and dignity… People with learning disabilities have the same rights and are entitled to the same expectations and choices as anyone else… Good practice in health services for people with learning disabilities ensures that their rights are known and respected, provides information…shows commitment to quality improvement, uses the evidence base available”.

56.2. More generally, the Government aims to “reduce the incidence of avoidable illness…enable people who are unable to perform essential activities of daily living, including those with chronic illness [or] disability…to live as full and normal lives as possible…better protection to vulnerable users… The National Institute for Clinical Excellence will…promote clinical and cost effectiveness”.

57. A long term strategy must be put in place to remedy the current situation; a number of steps can be taken at once. Major Government initiatives already under way to maximise the value of information technology in the field of health will greatly help. As well as doctors having swift access to prescribing information via PRODIGY (prescribing support software), they (and everyone!) will find relevant research with equal ease through the National electronic Library for Health.

58. All the action points below are intended to speed the execution of current policies. They are also intended to protect the interests of two of the most vulnerable sectors of the population: people with learning disabilities, and the doctors who treat them. The legal situation is complex and unresolved at present.

Action Points


(A) Health Authorities, Primary Care Groups, Health Improvement Programmes (HIMPs)
1. Make these issues a priority
2. Promote training, drug and side-effect awareness, autism awareness for all carers and relevant professionals
3. Ensure nonpharmacological alternatives are available: occupational therapists, speech therapists, psychologists, etc.
4. Carry out audits re:
i. quantities of psychotropic drugs prescribed, specifically to people diagnosed with learning disabilities
ii. procedures for reviewing repeat prescriptions
iii. compatability of medications prescribed
5. Institute carefully monitored slow downward titration of psychotropic drugs for this patient group as a fundamental goal; get local pharmacies to cooperate.

(B) NHS Trusts
1. Carry out audits re:
i. comparative practice of GPs and consultants
ii. handover arrangements between GPs and consultants
iii. role of nurses in reaction monitoring
iv. effectiveness of communications with carers

(C) Local Government
1. Ensure challenging behaviour and learning disability teams represent the interests of the client group in question and do not have a solely pathological view of “abnormality”.
2. Support local advocacy initiatives
3. Provide high quality respite care
4. Monitor quality of carer training

(D) Government
1. Commission a report on the legal and human rights situation of people diagnosed with learning disabilities
2. Strengthen the legal position of citizens’ advocates [8]
3. Recognise rights advocacy as one of the core competencies for carer NVQs
4. Give tax incentives to companies which facilitate their workers to become advocates (eg by allowing them some time to pursue this during work hours, or by recognising advocacy as a worthwhile workplace competency)
5. Look at ways to encourage people with physical disabilities – who may have relevant knowledge, empathy, time, and persistence – to become advocates for people with learning disabilities

(E) Department of Health
1. Put these matters near the top of the NICE (National Institute for Clinical Excellence) agenda
2. Direct every HIMP to prioritise these issues, monitor iatrogenic effects, preempt prescribing cascades
3. Direct every Health Authority to ensure audits listed above take place
4. Ensure coherent, integrated, development of software so that:
    I.PRODIGY, software supporting all prescribing [xvi]
a) flags guidelines, including re titration rates, problematic copharmacy, drug-reduction rather than copharmacy for side-effects, identification of possible medical problems as side-effects
b) requests (but does not require) written explanations of overrides
c) warns clinician of frequent or persistent overrides, potentiating HA intervention
d) informs HA of frequent or persistent overrides by any practitioner
    II. National electronic Library for Health, available to doctors, patients, and carers alike, via the Internet or CD-ROM
a) flags all the same guidelines as PRODIGY (in simple language)
b) gives easy hypertext access to relevant abstracts or full texts to browse
5. With the Audit Commission, incorporate individual audits into a nationwide comparative survey of psychotropic prescribing
6. Generate appropriate targets for psychotropic prescribing on the basis of that survey
7. Fund extra community pharmacists

(F) Care management
1. Be aware of the potential hidden costs of medication regimes
2. Ensure staff receive proper training on the medications they administer, including side-effects, preferably from a non-commercial pharmacist
3. With dispensing pharmacist, tighten procedures for PRN medications
4. Ensure staff are aware of nonpharmacological approaches to challenging behaviours
5. Ensure adequate staffing so that service users lead interesting and fulfilling lives
6. Make reducing the medication burden of their clients an explicit goal
7. Develop medication policy in liais on with primary care groups
8. Discuss emergent policy with all relevant medical personnel
9. Encourage advocacy for all service users,
10. Actively involve families and advocates in planning wherever possible
a) keep families and advocates informed
b) welcome visits from families friends and advocates

(G) Carers
1. If service users are distressed, try to understand why
a) look for physical causes like toothache, constipation or drug effects first
b) look for sensory or psychological explanations next (up to 40% of people with learning disabilities may have sensory problems [xvii])
c) only think of approaches to a psychiatrist if carefully considered behaviours remain otherwise inexplicable
2. Know the medications you administer
a) their possible effects both beneficial and adverse
b) the likely timetable for beneficial and adverse effects
3. Get a clear statement from the prescriber as to the therapeutic goals of any treatment
4. Monitor the medications in terms of those goals, note your observations and take notes to drug reviews
5. Monitor the medications in terms of side-effects, note your observations and take notes to drug reviews
6. Emphasise the need to “aim low/go slow” in drug reviews
7. Anticipate possible withdrawal effects, press for gradual reductions, provide sensitive support during this
8. Monitor withdrawal, note your observations and take notes to drug reviews
9. Accept that complete withdrawal may not always be possible, especially for those who have been medicated for decades.

(H) Doctors
1. Recognise that abnormality is not necessarily pathological
2. Appreciate that people who do not speak or are otherwise learning disabled mays understand a great deal
3. Appreciate that people who do not speak or are otherwise learning disabled typically experience a wide range of emotions which can as easily be identified and understood in terms of their experiences as the emotions of any other person
4. Appreciate that sensory problems may be playing a role in someone’s psychological distress [xviii]
5. Recognise and be prepared to have recourse to a wide range of nonpharmacological treatments [xix]
6. Recognise the autistic spectrum, check for autism relevant information (to be provided by National Autistic Society on database)
7. Appreciate the value of carers, professional as well as non-professional, in forming an accurate clinical picture
8. Avoid initiating repeat prescriptions of any psychotropic and especially neuroleptic medication unless there are compelling reasons for suspecting serious mental health problems
9. Recognise side effects and withdrawal effects, especially re neuroleptics – always titrate gradually and aim low
10. Remember that although the newer “atypical” antipsychotics have revealed fewer of the old style side-effects, only clozapine (restricted to schizophrenia) has been around for longer than a few years – new side-effect profiles will emerge in time.*


A number of people generously shared their expertise with me during this research. I owe thanks to all the following: Dr Lorna Wing of the Centre for Social and Communication Disorders (NAS); Dr Paul Shattock (PhD Pharm) of Autism-Europe and the Autism Research Unit in Sunderland; Professor David Branford (PhD Pharm) of De Montfort University; Professor Malcolm Lader of the Institute of Psychiatry; Health economist Richard Grieve, of Guy’s Hospital; Anne-Sophie Parent of Autism-Europe; Alison Cobb of Mind; several high street and hospital pharmacists; Dr Ruth Balogh; on the autistic spectrum, David Nicholas Andrews and Andrew Walker in the UK, Jared Blackburn and Edgar Schneider in the USA; Andy Smith of the National Self-Harm Network, Eve Grace, Kimber Barcant, Mike Lesser, and Dominic Gill. Harborough School (Upper Holloway, London), and members of my family. The Autism working group at the University of Hertford provided a forum for a first sketch of the case studies, and much useful comment. The involvement of E.B.McGinnis of Mencap in the last stages was invaluable, as was Mrs Patsy Kehela’s. I’m also grateful to Glenys Jones and Rita Jordan who commissioned the short write-up of my research which forms the basis of the text here. Lastly, I am grateful to the individuals who were the subjects of this study; I hope their lives will benefit from it. I greatly admire and respect their resilience, their integrity, and (especially Alan and Doreen) their humour through adversity. Doreen’s uncrushable fighting spirit will always be an inspiration to me.

[1] About half this text forms the body of a report on the three case studies of individuals on the autistic spectrum, commissioned by Glenys Jones and Rita Jordan for the occasional journal Good Autism Practice. While that was principally aimed at individuals concerned with autism, this text targets institutions concerned with people with learning disabilities in general. 
[2] Headings under which cost data were entered : trifluoperazine (stelazine); flupenthixol (depixol); procyclidine; carbamazepine (tegretol); thioridazine (melleril); paracetamol; chlorpromazine (largactil); risperidone (risperdal). Ex CIPFA: CPN home visit; Monitoring ;Travel monitoring ;Prescription cost to prescriber;X-ray including radiologist report; Surgeon’s fee; Anaesthetist’s fee; Consultant; Registrar; Dietitian; GP; Hospital in; Hospital out; Sinus washout; Homeopath;Travel GP; Travel hospital;Travel dietitian;Travel homeopath. Carer time GP;Carer time administering nasal douches;Carer time discussing nose;Carer time discussing weight; Carer time discussing movement disorder; Carer time hospital out; Carer time hospital in; Carer time dispensing medications and record keeping;Carer time dietitian; Carer time homeopath. 
[3] His autobiography, Apologia pro Vita Sua, 1999, Jessica Kingsley. 
[4] From Autism, 1998 2 (3) 
[5] Grandin, Temple: 1997: Thinking in Pictures: Vintage Books: New York: 222pp. 
[6] Eg abrupt dose rise/reduction, Continuing or increasing drug although it’s admittedly not working Abrupt withdrawal Adding medication to side- or withdrawal-effect Copharmacy with drugs which potentially damage the same organ or organs Dismissing carers’ legitimate concerns 
[7] If one fifth of one third of the estimated 150,000 people with serious learning disabilities in the UK (estimate from: People with learning disabilities:D Felce, D Taylor, K Wright, pp412-450 Health Care Needs Assessment vol2 Ch 19, General Editors Andrew Stevens,James Raftery.Published by: Radcliffe Medical Press) have costs equivalent to the average herein then the annual NHS neuroleptic-related costs would be £6,600,000. 
[8] If fully implemented the Disabled Persons Act (1986) would have entitled people with disabilities to appoint a “representative” to act on their behalf in relation to Social Services provision (Information from Citizens Advocacy Information and Training, Unit 164, Lee Valley Technopark, Ashley Rd, London N17). That role might be extended to include Health Services provision.

[i] See eg Manchester, D: 1993: Neuroleptics, learning disability, and the community: some history and mystery: British Medical Journal: 307: 17 July: 184-187 or Branford, D: 1996: A review of antipsychotic drugs prescribed for people with learning disabilities who live in Leicestershire: Journal of Intellectual Disability Research: 40: 4: 358-368 
[ii] see eg, Attwood, C: 1993: Why Does Chris Do that?: National Autistic Society: London or Emerson,E: 1993: Challenging Behavious and Severe Learning disabilities – recent developments in behavioural analysis and intervention. Behavioural and Cognitive Psychotherapy, 21, 171-198. 
[iii] See Branford, D: 1996: Factors associated with the succesful or unsuccesful withdrawal of antipsychotic drug therapy prescribed for people with learning disabilities: Journal of Intellectual Disability Research: 40: 4: 322-329. Bhaumik S, Branford D, McGrother C, Thorp C: 1997: Autistic traits in adults with learning disabilities: British Journal of Psychiatry:170: 502-506 
[iv] see eg, Autism Europe: 1998: Draft code of good practice on prevention of violence against persons with autism: Brussells: Autisme-Europe: 97pp 
[v] eg, 
[vi] See eg Tranter,R & Healy,D (1998) Neuroleptic discontinuation syndromes, J Psychopharmacology, 12,4,401-6, or Age Concern, Levenson R: (1998) Drugs and dementia: a guide to good practice in the use of neuroleptic drugs in care homes for older people: Age Concern: London 
[vii] Grandin, Temple: 1997: Thinking in Pictures: Vintage Books: New York: 222pp. 
[viii] see eg, Autism Europe: 1998: Draft code of good practice on prevention of violence against persons with autism: Brussells: Autisme-Europe: 97pp or Signposts for Success, NHS executive 1998. 
[ix] Hughes D, McGuire A: 1997: A review of the economic analysis of obesity: British Medical Bulletin: 53: 2: 253-263 
[x] Stanton, JM: 1995: Weight gain associated with neuroleptic medication: a review: Schizophrenia Bull: 21: 3: 463-470. Baptista T, de Baptista EA, Hernandez L, Altemus M, Weiss SR: 1997: Tamoxifen prevents sulpiride-induced weight gain in female rats: Pharmacol Biochem Behav: 57: 1-2: 215-222. See also Penn JV, Martini J, Radka D: 1996: Weight gain associated with Risperidone: J Clin Psychopharmacology: 16: 3: 259-260 
[xi] See eg, Bowden CR, Voina SJ, Woestenborghs R, De Coster R, Heykants J, Stimulation by risperidone of rat prolactin secretion in vivo and in cultured pituitary cells in vitro. J Pharmacol Exp Ther 1992 Aug;262(2):699-70; Popli A, Gupta S, Rangwani SR Risperidone-induced galactorrhea associated with a prolactin elevation. Ann Clin Psychiatry 1998 Mar;10(1):31-3; Shiwach RS, Carmody TJ. Prolactogenic effects of risperidone in male patients–a preliminary study. Acta Psychiatr Scand 1998 Jul; 98(1):81-3 
[xii] Adapted from 
[xiii]Power M, WOQOL Group: 1998: The WHO Quality of Life Assessment (WHOQOL): Development and General Psychometric Properties: Social Science of Medicine: 46: 12: 1569-1585 
[xiv] Grandin, Temple: 1997: Thinking in Pictures: Vintage Books: New York: 222pp. 
[xv] Dimond, Prof Bridgit: 1998: Common Law Powers: Bournewood and the protection of the mentally incapacitated adult: Mental Health Law and Practice: Psychiatric Care (1998) 5(5), 197-199.
 See eg BMJ 1999;318:1276-1279 ( 8 May ) Education and debate Does continuing medical education in general practice make a difference? Peter Cantillon, lecturer, Roger Jones, Wolfson professor. In this overview the authors conclude that “reminders by computer have been shown to be effective educational strategies for general practice.” 
[xvii] See eg Signposts for Success, NHS, 1998, p98. 
[xviii] Op cit 
[xix] See eg Morgan,SH (1996) Adults with Autism. Cambridge: Cambridge University Press or Bradley,V, Ashbaugh,J & Blaney,B (1995) Creating Individual Supports for People with Developmental Disabilities or Emerson,E, McGill,P & Mansell,J (1994) Severe learning disabilities and challenging behaviours: designing high quality services. Chapman and Hall.

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